The interoperability of shareable medical data “is the ability of different information systems, devices and applications (systems) to access, exchange, integrate and cooperatively use data in a coordinated manner,” according to the Healthcare Information and Management Systems Society (HIMSS).
Interoperable systems can share data across organizational and national boundaries. By doing so, these systems can improve healthcare for individuals and communities.
The COVID-19 vaccine research made clear that data interoperability and shareability are necessary next steps to optimizing research and delivery of vaccines and other medical treatments, including orphan drugs for rare diseases. While steps toward improving the interoperability of health data are underway, much work remains.
The Current State of Data Interoperability and Shareability
HIMSS identifies four levels of data interoperability:
- Foundational (Level 1) interoperability establishes the connections among systems, so that two systems can communicate data to one another. This level focuses on data security as part of transmission requirements.
- Structural (Level 2) interoperability focuses on formatting. Data format, syntax and organization are aligned so that both systems can read and interpret shared data.
- Semantic (Level 3) interoperability delves into standardizing data elements and definitions, so that users can interpret data according to a shared framework for understanding. This form of interoperability makes shared data usable for humans, not merely for computers.
- Organizational (Level 4) interoperability develops policies, standards and regulations for data sharing across organizations and societies.
All four levels of interoperability are necessary to realize goals of truly interoperable, shared data. Each level requires attention from specialists with a different set of strengths and priorities.
Government efforts to improve interoperability have accelerated in recent years. To boost interoperability efforts at all four levels, the Office of the National Coordinator for Health Information Technology “leads and coordinates interoperability activities nationwide” by supporting efforts like standards development, health IT certification and policy creation.
In 2021, a final rule by the Centers for Medicare & Medicaid Services took effect, requiring that U.S. health plans make data interoperable and shareable with patients, providers and other payers.
Efforts to improve interoperability face several challenges. First, healthcare data is currently expanding at a prodigious rate — faster than any one system or workgroup can keep up. About 30 percent of all data generated worldwide today is healthcare-related, write Greg Wiederrecht, Sasson Darwish and Andrew Callaway at RBC Capital Markets.
Second, while standards are being established for data interoperability, data created on existing systems is often generated without reference to these in-development standards. That increases the total volume of data with limited or no interoperable value. For instance, much of healthcare data is generated without common data elements (CDEs) that allow for sharing data while preserving the data’s meaning.
Lack of metadata and other references “limit the findability, accessibility and reusability of data, thus diminishing its value,” write R.D. Kush and fellow researchers in a 2020 article in the Journal of Biomedical Informatics. Missing CDEs also make it difficult or impossible to share data in a way that adheres to the FAIR principles, which focus on data that is Findable, Accessible, Interoperable and Reusable.
Visions for an Interoperable, Shareable Future
“Introducing a system in the USA that allows for efficient access to such health data and ensures auditability of data facts, while avoiding data silos, will require fundamental changes in current practices,” write Ana Szarfman and fellow researchers in a 2022 article published in Nature.
Szarfman et al. recommend an approach to interoperability that emphasizes “comprehensive and binding standards.” Their specific recommendations for improving interoperability in healthcare data include:
- Using standardized systems for data collection and transmission.
- Implementing universal identifiers for individual patients and end users.
- Creating a reference standard infrastructure to allow lab results to be calibrated and integrated when equivalent but not identical tests are used.
- Modernizing working practices.
Several existing tools are being put to service in achieving these goals. Open application programming interfaces (APIs) allow legacy systems to communicate with one other, improving connectivity that can support modernized working practices. For instance, hospital and clinic staff can get patient records, insurance pre-authorization information and other needed information in real time rather than waiting days for a response, says Ruby Raley, vice president of sales and alliances at API tools provider Axway.
APIs are already widely used and widely understood, and standards exist both for API creation and for data security related to them. Their broad use and support make APIs a cost-effective option for improving data operability in healthcare, write William J. Gordon and fellow researchers in a 2021 article in the Journal of the American Medical Informatics Association.
Data interoperability offers significant value to the healthcare industry. “We have estimated that the value of true semantic interoperability in healthcare would be approximately $78 billion per year in steady state after a 10-year rollout,” predicts healthcare and IT consultant Blackford Middleton. Other levels of interoperability would add value to this total as well.
Using Today’s Tools to Support Interoperability Now and Tomorrow
Legislative and administrative efforts to boost interoperability reflect a growing concern about the need for interoperable, shareable health data. Yet these efforts alone won’t be enough.
In a 2022 article, for example, researchers A. Jay Holmgren, Jordan Everson and Julia Adler-Milstein found that “[no] evidence of an association between alternative payment model participation and interoperable data sharing was found,” even when legislators intended specifically to boost interoperability and shareability by pushing providers to embrace the alternative payment model.
For patients, providers and payers, the value of data interoperability in healthcare will be measured less in dollar amounts than in the quality of the diagnosis and treatment experience. This is especially likely to be true for patients with rare diseases, who often face significant hurdles both in acquiring the correct diagnosis and in obtaining the appropriate treatment.
Imagine, for instance, a patient who receives a rare disease diagnosis while the patient’s family is preparing for a cross-country move. With interoperable data sharing, the patient no longer needs to weigh the costs and benefits of beginning treatment with their current provider versus postponing treatment until after the move is completed and a new provider relationship established.
Instead, the patient can use a single platform to communicate their needs, share symptom and side effect development, and reach providers, payers and pharmacists. Information collected on this platform coordinates seamlessly with the patient’s EHR, which any provider in the country can access when needed. When the patient finds a new clinic or provider at their new home, that location can see:
- Exactly which medications the patient needs.
- How they are to be administered.
- When the patient last received treatment.
- The payer relationships that support the patient’s access to medication.
In a fully interoperable system, patients are spared the burden of tracking treatment, symptom, payer and pharmacy information. Providers, payers and pharmacies can communicate easily with one another to meet the patient’s needs as they arise, reducing unnecessary delays between prescription of a needed medication, the paid fill of that prescription and dispensing the medication to the patient.
A fully interoperable, shareable medical data world remains more vision than reality. The tools and standards to realize that vision, however, are under robust attention and development today. Using platforms and tools that already exist can help healthcare industry participants improve communication, share data more effectively and produce better outcomes for rare disease patients.
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